Sunday, November 11, 2012

Necator americanus, I love you

It is November 11, 2012.

I feel better today quite possibly than I ever have in my entire life. I have been feeling very good, unbelievably good for at least three weeks now, actually seen a very upward trend for between four to six weeks.

This is an incredible thing because I am feeling as I did when I was a small child. I probably have not felt this good since I was five years old and that was forty-two years ago!

My autoimmune disease was already well-entrenched when I was seven, the evidence being profound allergic shiners and chronic sinusitis at seven. Those were different times and my parents didn't really even know what allergies were when they saw them, they were so uncommon in the early 1970s. I was dairy intolerant and forced to consume liquid milk daily, which no doubt did not help either. I had multiple bouts of tonsillitis, multiple courses of penicillin and had my tonsils out at age 5.

I did not have classically florid allergy symptoms until I was twelve, but I think I was dealing with a lot of chronic inflammation by seven. I was already having sinus infections that lasted for months and got on the antibiotic treadmill, probably taking antibiotics at least five or six times per year. The illnesses and treatment affected my personality. I had been absurdly extroverted and exuberant as a five year and I turned more and more inward with every year that went by from age seven on. Most people know me as very introverted. I would spontaneously dance all the time as a little child and by seven, it was like the music was gone from my life.

The only time I have felt this good was after I was inoculated with hookworm in Tijuana in June of 2011. I felt fantastic for seventeen days in a row, truly remarkable given the only times I have felt particularly good in my adult life have been starting a course of prednisone and then it unfortunately doesn't actually last one entire day. I guess my body caught up with the worms then and unfortunately, my beautiful wormy honeymoon with my twenty-five new friends drew to a close.

As a quick recap, we went to San Diego a little bit more than a year ago (November 5, 2011) for the second time. I was already hosting twenty-five hookworms and added another ten.

That November was a very hard month for me. Right before Thanksgiving, the very old lady I was taking of a few hours a day died a very painful death within days being put on a new medication. We also found out that my elderly neighbors, one on each side of my house and a part of my life since childhood, died. My elderly mother also needed to get in to see a specialist for an urgent referral for what all of her doctors assumed was cancer.

Things went downhill from Thanksgiving to New Years. I got sick at Christmas with one of my interminable sinus infections. I woke up New Year's Day with a migraine and it lasted for seventy-two horrible days.

I was put on multiple courses of antibiotics to try to deal with the infection in my head.

I don't know what was going on with my worms. There was the possibility that there had been some factor that negatively impacted them, something dietary or a medication. Unfortunately, there are a lot of variables at work and it's hard to know which could be significant. Perhaps my hookworms were just stunned. After another miserable spring, I had to go have my own biopsies for six suspicious pre-melanomic sites, which involved having injections of lidocaine. Given issues with our wonderful health insurance system in America, there was no other way of getting the procedures done without lidocaine, because of the reimbursement schedule and the amounts of time involved.

We decided that everyone would top off in the beginning of July and I assumed that my worms were either gone or defunct, since I had lidocaine at the end of June. So it was another twenty-five as a top off. That was around July 3. It's been eighteen weeks now,almost 126 days. I would assume I'm hosting more than 25, since I am feeling so much better continually than I did with my initial 25.

I notice now significant decrease in the amount of continual congestion that I have dealt with for what feels like forever. I have significantly less swelling in my face, wrists and ankles. It seems like my beyond lethargic adrenal glands are actually functioning, because my continual thirst and salt cravings are significantly diminished, more than I actually can ever remember. I got a cold in September and it lasted only eight days and did not turn into a full blown sinus infection. This is only the second time in my adult life this has happened (the other time being the day after I was first inoculated.)

I feel fantastic and the degree of anxiety that I've dealt with my whole life is significantly lower. Now, of course, this may well be as a result of my children's incredible health improvements of the last year. My autoimmune disease took a harsh toll on my life before I had children, but it was nothing compared to dealing with two very sick children twenty-four hours a day, especially a child who cannot eat or sleep. The minimal comparative vivacity I retained from age seven to thirty-seven went out of my life entirely. I lost the ability to function such as I had before, living for months on four hours of sleep a day and waking up to dozens of times a night for over seven years. I thought I would never recover abilities I had taken for granted my entire life -- learning foreign languages, writing, retaining any information for more than a few minutes, actually really enjoying anything, for that matter. It's a horrendous row to hoe, being the mother of a very, very sick child with no end in sight and no real help except an overworked, exhausted and chronically ill husband.

My ten year nightmare of dealing with a very, very sick child is practically over with, entirely, as my daughter told me three days ago, "My tummy hasn't hurt for a long, long time and I'm taking almost no medicine. I think the [hookworm] treatment is working, Mama!" My son is blooming, now almost a month post-antibiotics and his PANDAS is kicked to the curb. I don't know if it's my immune system being stood down, my children's improvements or both. I'll take it, whatever it is.